Trying to find out if these results are normal or could be POTS??
I was wondering if my 17 year old daughter could have "POTS" I record them throughout the day at random times, the ones from lying to sitting are when she wakes up. She has a terrible time with feeling yuk almost everyday, feels so sick to her stomach, shakes,lethargy,pale, has fainted in the shower,usually she is worse in the mornings, but feels bad throughout the day, she has other symptoms, like IBS,bladder spasms,muscle aches,headaches, and other things too. Here are a few of her blood pressure and pulse readings:
lying - 97/62 80 101/59 72 97/64 76
sitting - 94/65 85 115/67 96 101/69 87
stand - 107/70 118 89/68 129 101/72 105
these are in the pm after sitting a short time : sit 109/70 97
stand 111/76 118
I am getting soo frustrated have been trying to find out why she feels bad for sooo long and she was diagnosed with orthostatic hypotension, but i saw about POTS and wondered if it could be more this. She is seeing a cardiologist in aug. I wondered if anyone with POTS has the same happenings with their pulse as my daughter or is hers actually normal. I have no clue.
I'm so sorry to hear that your daughter have all of these symptoms and suffering.
It must be terrible to be a mother trying to help her and don't know what to do...
What kind of tests has been done?
and what kind of doctors have she seen?
How long have she been feeling sick?
And to the BP: I think it's kind of low, but I'm not a doctor. I think that most doctors would say that her BP is a healthy BP for a young girl. But it's good that she is seeing a cardiologist when she's having all those symptoms. Most cardiologist knows about POTS and can diagnose her.
When you were measuring her BP; for how long had she been lying down, sitting and standing?
It's normal that BP and heartrate need a little time to normalize from lying, sitting and standing.
A definition of POTS from wikipedia:
The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.
This tachycardic response is sometimes accompanied by a decrease in blood pressure and a wide variety of symptoms associated with hypotension.
Wikipedia and dinet.org has some great information about POTS.
I have some POTS symptoms, but my cardiologist haven't giving me the diagnose POTS.
My BP and pulse after lying down 13 min.
BP: 115/74, Pulse 56
BP and pulse after standing for 13 min.
BP 110/70, pulse 134
its varies a lot from hours to hours, days to day.
my TTT (tilt table test) was positive and my doctors told me that I had very labile BP.
they advice me to drink about 3 litres water a day and eat salty food. That would make my bloodvolume higher, and a higher bloodvolume will make BP higher.
Maybe you can try this with your daughter to see if it's helps. You need to consult your daughters GP about this. To much salt isn't healthy, either is too much water.
I'm drinkning licorice tea on days where my BP is low, sometimes it helps me. Maybe it would help your daughter?
I've read that POTS can dissapear if its starts when you're young. young people can grow away from it.
This forum has a lot of great helpful people, I'm sure that somebody with more info about POTS will respond you.
I hope that the cardiologist can help you and your daugther and give you some useful answers and treatment! Best wishes to you.
Hi there I am waiting on Cardiology assessment of my tilt table test. I know I have POTS for a couple years just waiting on formality. From the readings you give it seems to me it is possible that your daughter has POTS. I am not a doctor but some of the symptoms you describe make it likely. There are a few sites dedicated to POTS/Dysautonomia on the net. Also facebook has pages and there are many teenagers who have made youtube vids. It might help your daughter to look at them, know she isn't alone. Most young girls do recover so have hope in that. Best wishes
Thankyou so much for your replies,
We actually had a very scary episode yesterday ( like the ones that happen) we just happened to be recording her blood pressure and pulse yesterday and it happened.
When my daughter woke up (while still lying in bed) her blood pressure was 93/56 with a pulse of 77. Then she went to the bathroom, came into the kitchen and poored herself a bowl of cereal, then we retook it,(approx 8 mins since the first readings) it was 47/26 with a pulse of 140 we thought the machine was wrong then she said she was going to be sick then fainted. Scared the crap out of me, I got her lying and lifted her feet higher, then she started to feel better. It was very scary.
This usually happens when she is in the shower getting ready for school so i actually feel lucky we were recording it. I spoke with a nurse at cardiology(she hasn't seen then yet but decided to phone them about it) and she said if it happens again to take her to the er because it was so low and to let her regular doc know how low it got. She is talking with her docs today and calling me back to see if she needs to be seen sooner than middle aug.
To:Ida22 you asked me some questions, she has been to a Gastroenterologist,rheumatologist,urologist,physical therapy,bone and joint doctor, she has had ongoing problems in these areas for more than 5 years. she gets headaches almost everyday, feels not well most days ( mornings being worse). She has been diagnosed with Fibromyalgia,Bladder dysfunction,migraines,IBS, has had upper gastric problems, its just all soooo frustrating. I have to say tho i hate this happened again yesterday but its the first i feel we might be on the road to getting the right answers to make her feel better.Thankyou for the information. I hope you are doing good, and is the extra fluids and salt helping you? do you feel better from it?
To: anotherpotsy - Thankyou for the information i will definately look it up and show my daughter, hope you are doing well.
Thankyou again, it helps to be able to talk to people that have an idea of what is going on :) We get soo frustrated trying to help (and not being able to) and going back and forth to doctors etc, she told me she has even thought they think she is making it up, so for her it is a relief to finally see numbers as to what is happening with her, and thats its real. We have told her that we WILL get an answer one day and we know shes not making any of this up.
So sorry to hear about the fainting! It isn't funny to faint or to watch it...
I hope that your daughter get the appointment sooner than aug. Hopefully the cardiologist will provide you with answers. she really has a lot of things...
Fluids and salt was helping me a bit, but I couldn't drink so much fluids. I always felt full.
But many people feel it helps them a lot, so you should try this, maybe it will helps. I found liquorice tea more helpfull than water and salt. But we are all different.
Thankyou for your replies. We are waiting on her doctors phoning back. We are working on the fluids and salt, not easy but trying to keep track of it.
This morning she felt bad and she had been sitting for a while on the couch then got up to open the door to let our dog in, since she felt bad i told her to take her blood pressure, it was 85/68 and pulse 137, she didn't faint this time thankfully.
Hoping to hear back from her doctor tomorrow and get an earlier appt for cardiology. Thankyou lda22, i have always told her we will get an answer one of these days :)
I suffer from POTS and I was told by the electrophysiologist who diagnosed me after a tilt table test in very simple terms that my heart was racing to keep me from passing out. Some do faint who have P.O.T.S. and others do not. Some people have a form of dysautonomia called NCS or neurocardiogenic syncope (fainting). You may want to ask to get referred for a tilt table test for your daughter. If your daughter is not regularly dehydrated for some reason (which can cause orthostatic hypotension, it should be investigated as to what form of orthostatic intolerance she has so at least she (and you) know what it is she has & if possible, find out the underlying cause of these symptoms she's suffering from.
Thankyou Livinginhope, her doctors phoned and have got her in for an appt tomorrow. I am actually excited as i think we might just finally get some answers to how she has been, or at least on the right road to finding out. I have read about the tilt table tests and it does seem like that would be the best way to go. Her appt is at cardiology at a childrens hospital, they are very good :) I have read up on POTS and other types of Hypotension, I will check the NCS one too so i will have an idea what they are talking about if they mention it tomorrow :) Thanks again everyone, will let you know how her appt goes, Scotslass
Just wanted to say my daughter saw the cardiologist today and he said she has classic symptoms of NCS, we are trying 2 weeks of extra fluids and salt and then if she is not feeling better then we will try a medication. We are going to do some research to see what else we can do to help. We talked about the Tilt table test and he said it would be good for when they are not sure, but he feels my daughters symptoms quite clear for this. Thanks again everyone
Hi, been offline for a while, finally back :) my daughter ended up getting put on Fludrocortisone(Florinef) she has been taking it since about sept last year. She has now started tho having fainting episodes(well nearly fainting she is able to lie down so she doesnt fall) almost everyday. She is sooo sick to her stomach with this. When she gets these episode she feels blah the rest of the day, and feels like she has no energy. I have read more on both Neurocardiogenic Syncope and "POTS" and it seems to me more like she has "POTS" I asked her doc about this and he just said well they are all related, and would be same treatment. He said he felt we didnt need to do a tilt table test as he feels its not always accurate. He says she will probably outgrow it, but my concern is she is getting worse, especially lately where she misses school and work, With her too its always worse in the mornings. When i read about NCS it doesnt show the increase in heart rate while blood pressure lowers like she gets. I am just wondering if i should push the issue of the Tilt Table Test or would that be unnessessary? Would the TTT test be able to tell for sure if she has either NCS or POTS?
To be honest, it sounds as if your daughter is suffering from sort of endocrine dysfunction - quite possibly in the hypothalamus-pituitary-adrenal axis. What you've described are classic symptoms of adrenal insufficiency. You would be well served to take your daughter to see an endocrinologist for follow-up on this issue. Then again, I don't actually believe in "POTS" as a diagnosis.
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